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4/3/16 Settled at HOME!!!

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Home sweet Home!!! Ally is comfy in her bed, cathed and watching Katy Perry😍!! I want to personally thank Beth Lockwood , Annie Landefeld, Sherry Langland and the Cure SMA – OKI Chapter for your local support, gifts…..and listening ears while in Cincinnati. Thank you to all are friends and family who helped and/or sent gifts, meals and Thirty-One donations for Ronald McDonald House from afar and prayed for Ally. Thank you to my mom- Carol Neumann Smaron for soooooo much and friends-Brenda Scudder Zakrzewski, Jim Zakrzewski, Courtney Zak, Evelyn Schein, Jordan Schein for helping with Melissa. Thank you to Taylor Maruszczak for also helping with the dogs and house. We still have a long way to go with the recovery process and trying to resolve the urinary retention issue but we are HOME!!!! Ally will hopefully return to school in about a month and maybe for shorter periods sooner. One last thanks to God and the angels who watched over Ally and guided the medical professionals. 🙏😇

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Happy to be back in Chicago seeing this skyline. Crazy there is this much traffic on a Sunday afternoon, but focusing on the silver lining that we are 30 minutes from our home and Ally has done EXCELLENT on the 5-6 hour ride home (with some proactive, extra pain meds to keep her comfy). She and I have mostly stepped with only one stop to cough and suction her well.

4-3-16 On our way HOME!!!

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Officially on our way HOME after Ally’s spine surgery and some hospital recovery time. Two weeks total in the hospital wasn’t too bad due to how AMAZING the team is at Cincinnati Children’s Hospital and the incredible results of Ally’s surgery. She went from about an 80/90 degree “S” curve to around 40 degrees. I believe she grew a few inches too but we still need to do an official height. Thank you again for everyone’s prayers well wishes and support!😍

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4-1-16 @ 10:45 EST — GREAT NEWS, Goal to go home this Sunday

 

Ally is still working through urine retention issues, which are pretty common after a major spine surgery.  She has not gone on her own but after lots of practice and training from excellent nurses, I am confident in cathing and we have a clear plan of steps to help her get back to “the norm”.  This  includes finding a urologist at home, with consultation on the phone from Cincinnati till then.

 

Ally has begun Cardura medicine to relax the bladder neck, but we will be adjusting the dosage on Sunday and as needed. She could not use Flomax since it would (and when attempted began to) clog her J-tube. For now we are cathing every 6-8 hours. They are hopeful Ally will resume urinating on her own again, but it will just take time. With how successful her spine surgery was, I am okay with all of this and our plan.

 

We still have a long way in the recovery process and lots to organize with home nursing, getting new medical supplies and meds, figuring out a new routine for home after the semi scary, possible stressful 6 hour van ride home, but I will keep praying and am hopeful all will work out.

 

Thanks again for everyone’s support, prayers, well wishes, gifts, meal cards, donations for Ronald McDonald House…. We are soooo blessed to have soooo many wonderful friends and family in our lives!

 

P.S. – The pics are of Ally with her new musical movies I ordered through Amazon Prime and had delivered to the hospital with some Birthday $. She’s been overall very happy and pain is back under control with twice a day Celebrex and scheduled Tylenol. She will have some extra pain meds for the ride home and soon only be on meds as needed.

Ally Update 3/31 -10pm EST

 

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Ally is kinda at a standstill as we try some methods to try to help her with urine retention and now high heartrates (??discomfort, side effect of meds???). Today she travelled to another part of the hospital and got a baseline new dexa scan to check her bone density (for possible future infusions to help with brittle bones and prevent fractures), got her hair washed and cleaned up (thanks Emma Lockwood for sharing your basin), needed a second dressing on her back due to it getting dirty, I learned to sterile cathe her….. Thank you to Terri Cox Adora Lewis, Beverly Hutch, and Michelle Denic and Crothall team (big/nice surprises) for gifts and meal cards. Thank you also to the 9 ladies who have donated $25 toward Ronald McDonald House Thirty-One Products or ordered products. It’s not to late to make a donation thru Chase Quickpay or Paypal to tina@angelally.com. Thanks again for everyone’s support and prayers!!!

 

 

 

 

 

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PRETTY PLEASE — Help our family “Pay it Forward”
1) Make a donation TODAY of $25 or ANY amount towards Thirty-One products that will be purchased for families at Ronald McDonald House Charities of Greater Cincinnati (RMH) as a way to say Thank You for ALL they have done to help our family during Ally’s spinal surgery and recovery. We are at $150 with a goal of $500.
 
You can do this by using PayPal or Chase QuickPay and submitting a donation friend to friend to tina@angelally.com
 
2) Place an order TODAY (if possible by 6pm) for yourself and I will donate my entire 25% commission towards additional products to be donated to RMH.
 
 
Both of these are really helpful in helping our family since it will warm my heart immensely to help others and “Pay it Forward” as a way of saying Thanks for a lot of the stress relieved by having RMH across the street to eat some meals, shower and nap some. I even got an hour massage there yesterday! In addition, it helps me meet my monthly sales goal as I am VERY close to becoming a director with Thirty-One.
 
Thank you to everyone’s support and prayers!!! Thank you also to those who have already made a donation and those who decide to make a purchase.
 
Any questions, message me or call 773-981-7211

Wednesday 3/30/16 – pics

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A few pictures of Ally over the last three days. One of the days she tolerated 4 hours in her chair and other days 1-3 hours due to pain from her bladder issues. She is off ALL pain meds including Tylenol and just on a muscle relaxer 3 time a day. I LOVE the hospital gowns my mom, Carol Neumann Smaron, made for her!! We are also trying out a new trach that might be more comfortable for Ally.

 

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